Lille 2 – Empowerment Congress

On Thursday 30 January, at 14.00 PM the second (or main) congress started: “The European Congress: How to promote empowerment experiences of mental health users and carers in Europe? Indicators and good practices” , organized by the World Health Organization Europe Centre Collaborateur (WHOECC) in Lille.

It started with the plenary opening and presentation of the congress objectives. The congress was meant to present the Indicators on Empowerment as developed by the WHOECC, and to share the first outcomes of the survey that was done with these indicators. The organizers hoped to get useful feedback during this congress. I sat all the way in the back of the room, where I finalized the hand-out of the presentation of the position of ENUSP on the Indicators of Empowerment, and then Stephanie arranged some copies for the translators.

The opening was a relatively formal session about developments related to the indicators. Many stigmatizing remarks were made, such as: “the burden of mental illness for society” and “persons who suffer from long term severe mental health problems smoke a lot, eat bad and then they die young”. A WHO-representative said that it was “a false antagonism that hospitals are always bad for people, and it is the quality of care that matters” (in my opinion: it is up to the users to judge that). I didn’t actively participate in this session. I was preparing for making a statement on stage.

Between 15.30 and 16.00 the WHOECC Indicators of Empowerment were presented by summing them up. The Indicators of Empowerment are designed as a kind of questionnaire or check-list (19 yes/no-questions, very general and unclear). You can find the questionnaire down this page: http://www.ccomssantementalelillefrance.org/?q=ccoms-congr%C3%A8s-sur-lempowerment

The outcomes were shown in simple graphs (% yes/no). The outcomes of this questionnaire were split up in the categories of user, family and professionals. It wasn’t any high-level information, and even the information that was displayed was not very credible, because it was derived from a load of yes/no-answers to really oversimplified questions on very complicated themes. Like: “Do users have the right to vote? (yes/no)”, “are users involved in reviewing their own care plan? (yes/no)”. It just depends on interpretation how to answer these questions. So to me it is very unclear what the value of these outcomes is. And overall, I don’t think these indicators are really useful or empowering.

Then at 16.00 there was another coffee break and art and posters were displayed in the smaller rooms. After that, around 16.30 it was time for the session on “Opinions of European Representatives of service users, carers and families about indicators and examples of good practices”. In this session Piotr Iwaneyko and I were presenting ENUSP’s feedback on the Indicators of Empowerment.

The key speaker David Crepaz-Keay (Mental Health Foundation, England) was questioning whether the word empowerment has the same meaning to all of us, and whether we are sure that we are talking about the same thing and sharing the same goal. If so, that would enable more effective co-operation between users, family and professionals.

The first panellist was Kevin Jones (EUFAMI) who spoke about "how families suffer from a mentally ill relative", “it all falls apart and will never be the same again”. He told about how families are trying to take control over this situation, and want to stay involved at all levels of care, but also face a burden. The indicators can be a tool to measure progress in the development of care.

Then Piotr and I had 10 minutes to speak on behalf of ENUSP.
Piotr Iwaneyko explained that ENUSP is active for over 20 years and that ENUSP-representatives were involved in the early stage planning of the CRPD at UN level. Several members of ENUSP have developed good practices, such as the Personal Ombudsman from Sweden, Family Group Conferencing in the Netherlands, large scaled user involvement projects in a National Policy Forum in Romania, and also in Romania: a User-run village of national houses. And in France: a Peer-Advocacy training-programme. And there is more to be found on our website: www.enusp.org

Then it was my turn to speak about the indicators. I stated that ENUSP hadn’t been meaningfully involved in designing these indicators, but if we were, we probably would have done it differently: We would have taken the Convention on the Rights of Persons with Disabilities (CRPD) as a guidance. The CRPD is the current international human rights standard, which sets out the human rights of persons with disabilities, including the rights of persons with mental or psychosocial disabilities. ENUSP would have reflected on that.

The current indicators of WHOECC are grouped in 4 themes:
1. protection of human rights:
2. inclusion in decision-making
3. high quality care and accountability
4. access to information and resources

1. With regard to theme 1: protection of human rights
According to WHOECC this relates to having the right to vote, to hold public office and that there shall be no discrimination in legislation on employment.

ENUSP is of opinion that this is a very narrow and incomplete view on our human rights.
The CRPD is clear about the substance of our fundamental human rights. There shall be no forced treatments and no forced institutionalization which falls within the scope of freedom from torture, and under the Convention on the Rights of persons with Disabilities (CRPD) and the Convention Against Torture (CAT). This includes banning solitary confinement, constraints, forced drugging and general confinement based on a perceived or actual diagnosis or disability. As a clear illustration: Forced Community Treatment or any other forced treatment, is the opposite of empowerment. This is a clear indicator.


2. With regard to theme 2: inclusion in decision-making
According to WHOECC this relates to involvement and having authority in design and implementation of services.

ENUSP misses the word meaningful in involvement. Often user/survivor involvement is tokenistic and not meaningful in terms of having real influence and effects from involvement and changing the outcome of the process we’re involved in.

Also about decision-making the CRPD is clear. There is a prohibition of substitute decision making and a right to legal capacity (self-determination) under article 12 of the CRPD. This means there can be no guardianship-regimes and no substitute decision making, but people have the right to a free choice about one’s own life, including choice of residence and treatment. The right to choose includes the option to say no and to refuse treatment. Again these are very clear indicators.

The CRPD is ratified by 25 out of 28 countries of the European Union, including by the European Union as a whole. And the European Court of Human Rights recently stated that persons have “the right to be ill”. The CRPD makes clear that disability doesn’t make you less human, but you are entitled to all human rights. Self-determination or legal capacity is a gate to all other human rights. Without the right to make decisions, you cannot choose where to live, or make a complaint and so on.


3. With regard to theme 3: high quality care and accountability/evaluation
According to WHOECC this relates to inspection, monitoring, review of the own care and general care, and involvement in the training of staff.

ENUSP states that high quality care should benefit the user, so the indicator should be satisfaction according to users, as it is about the users’ wellbeing. Important aspects are for example the amount of choice: how many available alternatives are there? Is there any community based care?, Is this care individually tailored? Are there conditions, as in conditional support? Is there an additional burden (eg financial?)

There are many User defined Good practices, which should be made available, since there is a right to adequate care, as in the highest achievable standard of health and health care.

When it comes to accountability and evaluation: Having an actual or perceived psychosocial problem, diagnosis or disability is not a choice, so there should be no negative consequences attached. We have the right to be treated well with respect, and independent monitoring is needed (often monitoring is not independent), Monitoring and inspection should include users (art 33 CRPD).


4. With regard to theme 4: access to information and resources
According to WHOECC this relates to getting access to your own file and whether there is legal support.

ENUSP interprets the right to information as being a right to full information, not just access to one’s own file, but also access to information on other options, and information on the risks of for example medication. And the right to consult with the people of your own choice, and so on.

Regarding the legal protection of users rights, important indicators are: Are complaint procedures accessible and effective? Can any user complain about anything (or is it limited)? How many successes and adequate remedies have taken place? (we know that is generally very few), Is there access to legal support to make complaints? Does this support come from NGO’s or is it governmental?

On access to resources, this also relates to social status and stigma (such as access to finances, housing, work etcetera)


So to conclude:
Many concrete indicators can be derived from the CRPD in close consultation with users. However that is not yet done in these set of indicators as made by the WHOECC.
Many indicators of WHOECC are linked to policy and legislation level, and don’t really focus on the lived experiences of users. However, human rights are not just policy lines. Human rights are about the real experiences of people, the real rights.

But nevertheless we like to conclude with the following statement from our perspective: “It is easier to improve something than to start something”.

The official version of the full presentation of ENUSP’s position can be found online (soon) on the website of ENUSP: www.enusp.org and will also be published on the website of the congress organisers later www.ccomssantementalelillefrance.org


During my speech I was drawn by the cartoonist of the conference :) I think it’s a very nice cartoon.

After our ENUSP contribution, Ron Coleman gave a very firm presentation on the misuse of the word Empowerment. He started by asking everyone to stand up, and then asked to remain standing of you are completely orderly and never depressed or dysfunctional in any way. It appeared that “100% of the audience was disordered”. He spoke with a powerful voice: “How can you talk about empowerment, when you use such alienating words to describe us, which sound like we are of less value. That is not empowerment!”. He also firmly spoke about how empowerment in human rights history had to be TAKEN and it’s not that it was given out of sympathy. “Rosa Parks didn’t GET the right to a seat in the bus, she TOOK it. Rosa Parks changed history on her own, and now there is a room full of people and we say we can’t change the practices?? We should take the right to be seen as normal, and not have an ICD-11”.

It was a powerful speech and he got a good applause and there was still time for a few remarks.

Then one of the organizers took the microphone to say that some ENUSP-members had been involved in WHOECC activities in the past, so ENUSP’s statement of not being involved was not true according to him. In the following break time we had a private debate with this organizer, because according to our information the involvement had been very limited (such as invitations to speak at a conference) and not meaningful involvement in designing and influencing the outcomes. There was some typical tension in this debate. And somehow, the further substance of the ENUSP position wasn’t discussed.

After this session, there was another coffee break, and I got a lot of compliments on my contribution (including from human rights lawyer). The statement from ENUSP was said to be powerful and sophisticated. That is a positive achievement, although we don’t know yet if our contribution will really influence the outcome of this tool – which is exactly why the word “meaningful” matters in involvement.

Then there was one more session: a side-meeting from 18.00-19.30 of the International Movement for Citizenship in France, Quebec and USA. I was already too tired to take in any more information, like most of us, so we decided to just sit there and wait for the cocktail reception in the end. So then I tried to upload my cartoon on facebook during that session :)

The cocktail reception took place in the rooms where the art and posters were displayed, and we had some nice bites and drinks and talked to some people, before going back to the hotel. We got a ride from one of the organizers, which was nice (and again the misunderstanding about ENUSP involvement was discussed). At the hotel we spent some time in the lobby (Rene, Piotr, Stephanie and me) where we had a drink and a good time together. It was again very late before I went to bed.